I am sure many of you have dealt with this, or are dealing with it now. We had to move mom (who is 85 & has dementia) to a NH this past March. She had a stroke 16 years ago and her left side has been paralyzed since then. I have 2 brothers, but I am the only girl & the only one that visits her. She hates me... She never has anything nice to say to me or about me. I know it is the disease talking, but that does not make it any easier. She says how much she hates where she is, that she never sees anyone (not true, activities daily) and she never eats (not true - 3 meals a day and she has a drawer full of snacks that I replenish weekly), and she wears the same clothes for days on end (also not true, I do all of her laundry and I keep track if anything is missing). She will just burst out crying telling me how terrible I am for doing this to her, it was recommended by her doctor that she has 24 hr care and she would tell me over & over that she did not want me to have to clean her up (incontinence). She cannot walk, is in a wheelchair, I am not a kid anymore (keep in mind - it has been 16 years) and she is dead weight and the wheelchair is heavy as well. She was in a Geri Psych facility early in the year on one of her stints to the ER when they found nothing wrong, but she starts saying how she wants to die.... They act on that and moved her to a facility for evaluation. I was able to get her out after a week, but she ended up in rehab for a few weeks. I tried to take care of her at home after that, but it was just too much. I can't just quit my job. I had an aide coming in daily to get her up & showered & dressed. She was open to the idea of going to a NH and I thought it would help her with her boredom (and I know it does, she just has no memory). I am not sure what I am trying to get at here, but I was just looking for some advice. Some times it is a good visit, but usually it isn't....
What I’m saying is, don’t beat yourself up over this. Your mother is where she needs to be, no matter how she tries to guilt you into “springing” her. You’re not aiding her in her escape, so she “hates” you. It’s like a child who doesn’t get the toy they want, or the teenager who isn’t allowed to go to a party. They scream, “I hate you!” at their parents. Under no circumstances should you bring your mother to live with you. You can’t do it, but she doesn’t understand that. My mother thought she could live with us, too, in the upstairs of our home. I shudder to think how many times I would have had to call 911 when she took a flyer down the stairs. Do you want Mom and her vitriol to greet you each morning and last until you go to bed at night? You CANT quit your job. You need health insurance and a retirement account, neither of which you’ll have if you quit, or to mention any income.
You’ve done the right thing. Know that even though it’s difficult to accept.
Keep in mind that people with dementia have magical thinking, like they can manage in a home though they can't walk, have no short term memory, are incontinent, etc. They may think it's a easy solution, when in fact, it's a fantasy.
Plus, if you were going to place your mom in a facility and they said that ALL the care would be provided by one person, around the clock, 365 days a year, how would you feel about it? I think it's important to be honest with ourselves about how feasible and realistic things are.
As you said in your post...
The doctor recommended 24 hour care. Find the bigger bad guy here (in therapeutic fibs) and blame them!
Say... Sorry mom, I know you hate it here. But we are following the doctor's orders! I would love to take you back home, but the Doctor says that you need 24 hr care. Be prepared to say that at every visit.
And, Short visits. If she is decent, stay as long as you need/want. If not, if she keeps harping on how miserable she is, say, welp, sorry mom, I have an appointment! See you later.
And just a thought on timing... I try to only interact(for longer visits anyhow) with my mom in the morning. She is still somewhat my mom then. Sometime after 2pm...that changes. And any trouble we have ever had, has been after 2pm!
So maybe only visiting in the morning would help?
A reasonable person(and wow, don't we KNOW there isn't a thing reasonable about dementia!!) wouldn't continually expect more out of you than you can actually do. And you don't expect that of yourself either, right? So, please don't feel guilty. Wouldn't she probably be miserable anywhere? And how is that your fault? It isn't. Aging and disease are cruel.
You are doing a great job! She is being well cared for. Clean and well fed and safe. And has activities to be a part of, even if she doesn't remember. That is the important thing to focus on.
Hope this helps.
Hang in there, and big Hugs.
Sparkles
That is the MAIN factor, that she is safe. I agree, later in the day is worse.
I appreciate your comments. 😁
My mother was born in the house that was built by HER GRANDFATHER in the late 1890s. She and my dad bought a house behind that one, and she only had to go a few yards down the walk to get to “the family home”.
SHE expected to die at home, and so did the other brothers and sisters who continued to live there.
When Parkinson’s, Cancer, and vascular dementia took them away, a sibling always remained.
My mother spent 6 very comfortable years in an excellent NH very near me after breaking her hip at 89. The heartbreak of taking her out of her home made me physically and emotionally ill, and only now, 10 + years later, have I reconciled (somewhat) my “failure” to “keep her home”, where she would say, early in the battle, she wanted to be.
Now, I’m caring for her youngest sibling, the last, who entered AL at the least restricted level of care, but almost immediately was moved to the locked memory wing because of her inability to stop trying to “go home”.
I tell myself many times a day that her misery is not my fault, but I HAD TO BE the decision maker.
It doesn’t help AT ALL that she’s already broken a bone in a fall in her room at the AL, but what DOES HELP, is that the care she received for the injury was immediate and has been totally consistent, and I KNOW that no matter what kind of supports we’d have had in her home if she’d had a similar fall there, could never have been as good as what she’s receiving now.
There’s no solution that completely fixes this longing in our dear ones, but it helps me at least a little to know that their battle to make lives and get through the Great Depression can still, after all this time, be part of their lives now.
We do short visits, photos and treats, light conversation, pre-planned reasons for why we have to leave.
The best you can do is learn to tune it out. Change the subject to something else while there, if possible. Fudge the truth and/or responses. Don't argue or try to correct anything she says, just go along with it - they live in a new "reality". You can even go so far as to agree with her about how uncaring and nasty you are... :-) It would kind of take the wind out of her sails. YOU know the truth. Someone suggested having staff get her into her chair and take her for a walk (I would avoid the suggestions about taking her home!) That might give her a change of pace/scenery...
Someone mentioned how this behavior can get worse later in the day (sun-downing) Sounds like in your case this is true - several options are to visit earlier in the day if possible and/or some mild anti-anxiety med (I am not a fan of meds, but sometimes they are a necessary evil. Mom will occasionally get into a snit and I had to fight doc for it, but we got a mild Rx and use it only when needed.) One doc argument was it can be a fall risk, but it is only as needed (not often), she uses a walker, and generally it is late enough that within 30-60 m she goes to bed. Your mother is in a wheelchair, so there would be no fall risk.
So, understand you are doing the best you can, learn to tune out her rants, shorten visits if need be, make earlier visits and let the guilt roll off your back. You can see from the responses this is common behavior, and although it hurts and can be difficult to let it go, that is about all you can do. Also, if she blames you, repeat it is doctor's order (he/she gets the blame!) and she has to work on getting stronger, better, taking care of herself to get "home" (white lie, but may help redirect blame AND give her hope, false, but hope about returning home.)
If other family members give you crap, tell them if they are so smart they can take over and let them rant all they want! If they do not put up, they can shut up!
Funny that before moving mom, I usually got the blame for stuff, some really nasty. Since moving, she harped on my younger brother to take her back to the condo, even if I was standing right there! She has since forgotten the condo, and is focused now on their previous home (23-24 years ago) AND her mother (mom just turned 95, her mother has been gone about 40 years!) So I am fortunate that she no longer blames me. She might sometimes ask me to bring her to her mother's, but I say oh, too late in the day and it is not on my way home, maybe tomorrow! That is usually good enough. Generally visits are benign for me, thankfully, especially since the step back in time!
It sounds to me like you answered your own question and more than anything need a hug. You have done a remarkable job while your brothers did what? You advocate, keep track, and even do what I would find the breaking point, of cleaning her up physically. My mom's dementia is interesting in that while the memory is blown she is still physically quite functional. If my frustration and anger get the best of me, which I am trying hard to not let that happen, for my OWN well-being, she will revert to one of her Chatty Cathy snippets like "if you don't like it you can move". She is 96 next month; dad is 101 active with his issues, but deaf. The deafness has been an immense challenge for me (yes, not to mention for him) but at times is a blessing because he cannot hear what I am saying or screaming.
Mom and I have always had an antagonistic relationship. Has she done her best? I am doubtful. I try to realize she was limited in her own upbringing and capacities, but she was never an advocate for her own kids. Seriously I learned in the past week that my sister told me she was being pushed and bullied and that was why her tights were always ripping when in elementary or junior high...but my mother knew and didn't do much but bring new pairs of tights. So here we are now, the same old same old.
It's hard to sort out her vicious spitefulness from the dementia. Here is a woman capable of leaving one or sometimes two neatly written notes for me that say "taking dad out to lunch" or "went to a concert with dad to humor him" and yet in spite of a note that says DO NOT UNPLUG which has been placed by an outlet three times in the past 24 hours, she persists in unplugging it (the microwave) which requires a total reset. (looking into something to cover the outlet to protect it.
I empathize greatly with you because I am "IT". For now my dad is often around to keep an eye on her. If and when we lose him, I will need to continue to work to maintain my own life and retirement. But mom won't be able to be left alone as long as my part-time work day. I take it one day at a time, but worry.
Just because you are the girl/daughter, doesn't mean it's all your responsibility. Subjecting yourself to the emotional abuse in spite of being able to rationalize it is still painful. Cut back on how often you go. Take care of YOU. You have done the right thing, before you impact your own health, both physical and emotional.
I am not a support group person, and not all groups are the same...but our local Alzheimer's Assn did develop a group for adult children that meets once a month and I have found it very helpful. You are so not alone, and those of us who don't have the best relationships with their moms can so relate. This won't last forever. Take good care. Of you:-)
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